Celebrate National Sickle Cell Awareness Month by also shining the light on the physical and emotional pain that individuals with Sickle Cell Disease endure
by Mauvareen Beverley, MD
The majority of individuals with Sickle Cell disease in the US are Black Americans. They have two types of severe pain.
1. The physical unimaginable pain associated with Sickle Cell crisis
2. The mental and emotional pain when one is referred to as a “Drug Seeker”
The mental and emotional pain is avoidable and the physical pain is not, as it is a complication of the disease. The mental and emotional pain that an individual suffers while accessing care to eliminate the severity of physical pain during a crisis episode is unwarranted, unnecessary, lacks compassion and empathy and is a result of either conscious and unconscious bias towards this particular population. Patient voice: “When I am in crisis, the pain is so severe that I really want to die. When I am home and feeling better, these thoughts go away. Yes, I am a drug seeker. I need drugs to relieve my pain. I am not just seeking drugs” Medical evidence does not support the use of the word.
Some solutions are as simple as they are complex. Here's how we can address Health Disparities
-Eliminate negative language in medical records ex. Frequent flyer, drug seeker to describe Black patients with Sickle Cell Disease that is not supported by medical literature, non-compliant/non-adherent without asking the ”why” question. You don't know why John Doe didn't take his medication but you will refill that same medication he did not take without knowing why.
-For clinicians, nurses and social workers, be willing to understand the individual’s decision prior to negative labeling.
-Recognize that medical records have more negativity directed at Black patients.
-Once non-compliant/non-adherent is written 2 or 3 times in the medical records, those patients are now under the health bus and must maneuver the health system on their own.
Negative terminology affects getting appointments, excellent healthcare, patient engagement and negatively impacts health outcomes.